Saturday, February 19, 2011

Plenty of Kisses

Right now, we are trying a medication called Topamax, which is an anti-seizure medication given orally.  We "sprinkle" the capsules into some applesauce twice a day.  We have increased his dose gradually, and yesterday he finally reached the target dose.  Unfortunately, as was expected, we have noticed no improvement in his spasms  Thus, we are trying to prepare ourselves for what lies ahead.  

If we do not see any improvement in the spasms from the Topamax, Will is going to be admitted at the Clinic for a PET scan, 24 hour EEG study, and a spinal tap.  At that time he will begin a hormone injection treatment called ACTH.  After his initial hospitalization, Dan and I will have to give him daily injections of the ACTH, and he will need to have regular blood pressure checks, as well as blood and urine draws to make sure he is tolerating the medication.  If it works, the Dr. estimated the course of treatment will be approximately 5 months, if it does not, he will be gradually weaned off over a period of about 2 months and we will be on to the next medication.  

We are terrified of the ACTH, although we are somewhat terrified of just about everything to do with this right now.  ACTH has some very bad side effects, including significant weight gain, suppressed immune system, and moodiness.  His doctors are "not optimistic" that it will work, however, they said that we owe it to Will to try so that is what we are going to do.

We are having an extremely difficult time coping with all of this.  As parents, it is devastating to us to know that there is something terribly wrong with our son and yet there is nothing that we can do to make it better.  No amount of kisses will cure him, although I can assure you that he is getting plenty.


  1. My heart breaks for much sounds familiar, except that there is no clear cut "answer" yet as to what to do. It is so hard to watch your child suffer, to give injections, oral medications, hold them still for spinal taps and bloodwork, etc. Please know we will keep all of you in prayer in the coming months.

    Will and Jack are so blessed to have parents/family who love them so much and who will do whatever they need to help them get well.


  2. Dan and Kelly - I am praying for you guys and Will especially during your journey ahead. Thanks for keeping us posted, the pics of Will are so sweet.


  3. Kelly and Dan

    You are all in our daily prayers. We love you and are here if you need anything. Love bonnie & george

  4. Dan and Kelly,

    We will be following Will's blog. We are thinking of you all and you are in our prayers.

    Love, Eric and Nancy

  5. I can’t imagine what you are feeling as you work through this trial. We hope it helps knowing that you have so many friends thinking good thoughts for you, and praying for a good outcome.

    Will & Sherry